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St Thomas Lupus Trust
1,188 members120 posts

I'm worried that I have Lupus

Hi all

I would really appreciate some advice please. I am not expecting a diagnosis just an indication of whether I am being paranoid or not!

I was diagnosed with Fibromyalgia and Chronic Fatigue Syndrome three years ago. This is what I experience:

Frequent and severe pain that is usually in my chest, rib cage, lower back,abdomen and all down my arms in to my fingers. I have frequent episodes of Costocondritis.

Extreme fatigue. Not tiredness but a deep and debilitating fatigue when I often can't even think straight.

Shortness of breath. This is sporadic throughout the day. Its worse in the mornings.

For the last three months I have needed to urinate all the time. As soon as I have been I feel I need to go again. This is destroying my already broken sleep. If I try and hold it the pain in my abdomen and lower back is severe.

I often have a temperature for no apparent reason. At other times I feel so cold its like my bones are frozen.

Hair loss - when I comb my hair lots of it comes out. I have very thick hair so understand I will lose some but hair loss is recorded on my medical notes.

High blood pressure.

Depression and anxiety.

Poor memory.

My GP has struggled to manage this. I have recently been prescribed Pregabalin for the pain which is having no effect whatsoever despite an increase in dose. I have just been referred back to Rheumatology.

Is it paranoid of me to worry about it being Lupus? It's very much in my mind as my mum was diagnosed with Lupus in her forties and then was also diagnosed with Churg Strauss Syndrome. I have no idea if Lupus can be hereditary. I did have a blood test which I was told was for Lupus two years ago and the GP said it was fine.

I would really appreciate any insight/advice. Sorry for the long post and thank you for reading!

2 Replies

The referal to rheumatology should be useful and considering the fatigue and family history I would guess that blood tests including the immunological blood tests such as ANA will probably be done by rheumatology. This is a link to how Lupus is diagnosed .... lupusuk.org.uk/diagnosis/ Drs look for certain criteria .... It may be worth keeping a diary of symptoms in particular things that may help rule in or out Lupus diagnosis such as do you have sun sensitivity, and rash on your face, any joint pain etc. The charity Lupus UK do a progress diary that may help you keep track of symptoms ... lupusuk.org.uk/lupus-progre...

If the rheumatology appointment is a while off I would advise see GP and get a urine test regarding the needed to urinate all the time, as it may be an infection, and a urine test is also useful if you do have Lupus in order to check that your kidneys are OK


Hi, have you tried drinking aloe Vera gel for this problem?


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